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Mental Health of a Large Group of Adults With Disorders of Sex Development in Six European Countries.

Abstract

OBJECTIVE

To evaluate psychiatric symptomatology among 1022 persons with various disorders of sex development (DSD).

METHODS

The study was a European multicenter cross-sectional clinical evaluation in six countries (dsd-LIFE). The mean age of participants was 32.1 years (SD 13.4). The cohort consisted of 325 individuals with Turner Syndrome, 219 individuals with Klinefelter syndrome (KS), females with various XY-DSD conditions 107 with and 67 without androgenisation, 87 males with XY-DSD conditions and 221 females with congenital adrenal hyperplasia. The Hospital Anxiety and Depression Scale, the Short Autism Spectrum Quotient, the Adult Attention Deficit Hyperactivity Disorder Self-Report Scale, and self-reported mental health history were used to assess psychiatric symptomatology.

RESULTS

Across the six DSD diagnostic groups, clinical cutoff symptom scores were reached in 19.5% of participants for anxiety, in 7.1% for depression, in 4.1% for ADHD, and in 9.1% for autism. Mean depression and anxiety scores were higher compared to population norms in males with KS and males with XY-DSD. Compared to participants with other DSD conditions, men with KS reported significantly more mental health symptoms. Self-esteem, satisfaction with care, body dissatisfaction and experiences of shame were associated with psychiatric symptomatology in many DSD conditions.

CONCLUSION

A substantial minority of adults with DSD, with KS in particular, suffers from psychiatric morbidity. Across DSD conditions adults may share feelings of shame. Developing a positive self-esteem and body image may be challenging. Multidisciplinary DSD care that involves specialized mental health support can be of important value.

TRIAL REGISTRATION

German Clinical Trials Register DRKS00006072.This is an open-access article distributed under the terms of the Creative Commons Attribution-Non Commercial-No Derivatives License 4.0 (CCBY-NC-ND), where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially without permission from the journal.

Links

  • Publisher Full Text
  • Authors+Show Affiliations

    ,

    Department of Child and Adolescent Psychiatry, Center of Expertise on Gender Dysphoria, Amsterdam University Medical Centers, location VU, PO Box 7057, 1007 MB, Amsterdam, the Netherlands.

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    Charité - Universitätsmedizin Berlin, Coordinating Center for Clinical Studies, Institute of Biometry and Clinical Epidemiology, Berlin Institute of Health (BIH), Anna-Louisa-Karsch 2, 10178 Berlin, Germany.

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    Klinik fur Kinder- und Jugendmedizin, Universitat zu Lubeck, Ratzeburger Allee 160, 23538 Lubeck, Germany.

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    Department of Clinical Neuroscience, Karolinska Institutet, 171 77 Stockholm, Sweden and Child and Adolescent Psychiatry Research Center, 113 30 Stockholm, Sweden.

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    Department of Medical Psychology, Center of Expertise on Gender Dysphoria, Amsterdam University Medical Centers, location VU, PO Box 7057, 1007 MB, Amsterdam, the Netherlands. Department of Plastic, Reconstructive and Hand Surgery, Center of Expertise on Gender Dysphoria, VU University Medical Center, PO Box 7057, 1007 MB, Amsterdam, the Netherlands.

    ,

    Department of Medical Psychology, Center of Expertise on Gender Dysphoria, Amsterdam University Medical Centers, location VU, PO Box 7057, 1007 MB, Amsterdam, the Netherlands.

    ,

    Endocrinologie pediatrique, Centre de reference des maladies rares du developpement sexuel, Hopital Bicetre, Universite Paris-Sud, 78 rue du General Leclerc, 94270 Le Kremlin Bicetre, France.

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    Charité - Universitätsmedizin Berlin, Klinik fur Padiatrie mit Schwerpunkt Endokrinologie und Diabetologie, 13353 Berlin, Germany.

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    Klinik fur Kinder- und Jugendmedizin, Universitat zu Lubeck, Ratzeburger Allee 160, 23538 Lubeck, Germany.

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    Department of Women's and Children's Health, Karolinska Institutet, Karolinska University Hospital, 171 76 Stockholm, Sweden.

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    Klinik fur Kinder- und Jugendmedizin, Universitat zu Lubeck, Ratzeburger Allee 160, 23538 Lubeck, Germany.

    ,

    Department of Medical Psychology, Center of Expertise on Gender Dysphoria, Amsterdam University Medical Centers, location VU, PO Box 7057, 1007 MB, Amsterdam, the Netherlands.

    Source

    Psychosomatic medicine : 2019 Jun 19 pg

    Pub Type(s)

    Journal Article

    Language

    eng

    PubMed ID

    31232913

    Citation

    de Vries, Annelou L C., et al. "Mental Health of a Large Group of Adults With Disorders of Sex Development in Six European Countries." Psychosomatic Medicine, 2019.
    de Vries ALC, Roehle R, Marshall L, et al. Mental Health of a Large Group of Adults With Disorders of Sex Development in Six European Countries. Psychosom Med. 2019.
    de Vries, A. L. C., Roehle, R., Marshall, L., Frisén, L., van de Grift, T. C., Kreukels, B. P. C., ... Cohen-Kettenis, P. T. (2019). Mental Health of a Large Group of Adults With Disorders of Sex Development in Six European Countries. Psychosomatic Medicine, doi:10.1097/PSY.0000000000000718.
    de Vries ALC, et al. Mental Health of a Large Group of Adults With Disorders of Sex Development in Six European Countries. Psychosom Med. 2019 Jun 19; PubMed PMID: 31232913.
    * Article titles in AMA citation format should be in sentence-case
    TY - JOUR T1 - Mental Health of a Large Group of Adults With Disorders of Sex Development in Six European Countries. AU - de Vries,Annelou L C, AU - Roehle,Robert, AU - Marshall,Louise, AU - Frisén,Louise, AU - van de Grift,Tim C, AU - Kreukels,Baudewijntje P C, AU - Bouvattier,Claire, AU - Köhler,Birgit, AU - Thyen,Ute, AU - Nordenström,Anna, AU - Rapp,Marion, AU - Cohen-Kettenis,Peggy T, AU - ,, Y1 - 2019/06/19/ PY - 2019/6/25/entrez JF - Psychosomatic medicine JO - Psychosom Med N2 - OBJECTIVE: To evaluate psychiatric symptomatology among 1022 persons with various disorders of sex development (DSD). METHODS: The study was a European multicenter cross-sectional clinical evaluation in six countries (dsd-LIFE). The mean age of participants was 32.1 years (SD 13.4). The cohort consisted of 325 individuals with Turner Syndrome, 219 individuals with Klinefelter syndrome (KS), females with various XY-DSD conditions 107 with and 67 without androgenisation, 87 males with XY-DSD conditions and 221 females with congenital adrenal hyperplasia. The Hospital Anxiety and Depression Scale, the Short Autism Spectrum Quotient, the Adult Attention Deficit Hyperactivity Disorder Self-Report Scale, and self-reported mental health history were used to assess psychiatric symptomatology. RESULTS: Across the six DSD diagnostic groups, clinical cutoff symptom scores were reached in 19.5% of participants for anxiety, in 7.1% for depression, in 4.1% for ADHD, and in 9.1% for autism. Mean depression and anxiety scores were higher compared to population norms in males with KS and males with XY-DSD. Compared to participants with other DSD conditions, men with KS reported significantly more mental health symptoms. Self-esteem, satisfaction with care, body dissatisfaction and experiences of shame were associated with psychiatric symptomatology in many DSD conditions. CONCLUSION: A substantial minority of adults with DSD, with KS in particular, suffers from psychiatric morbidity. Across DSD conditions adults may share feelings of shame. Developing a positive self-esteem and body image may be challenging. Multidisciplinary DSD care that involves specialized mental health support can be of important value. TRIAL REGISTRATION: German Clinical Trials Register DRKS00006072.This is an open-access article distributed under the terms of the Creative Commons Attribution-Non Commercial-No Derivatives License 4.0 (CCBY-NC-ND), where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially without permission from the journal. SN - 1534-7796 UR - https://www.unboundmedicine.com/medline/citation/31232913/Mental_Health_of_a_Large_Group_of_Adults_With_Disorders_of_Sex_Development_in_Six_European_Countries L2 - http://dx.doi.org/10.1097/PSY.0000000000000718 DB - PRIME DP - Unbound Medicine ER -